Recovery rollercoaster

Things felt like they were getting worse again on Sunday, and on Sunday night I was given Oxycodone again to try to help with the pain. This was not a good move, as I spent all of Monday feeling nauseous. I will need to try to avoid opioids in future as I don’t seem to get the wonderful feeling everyone raves about, but I do get all of the nausea and other negative side effects.  

However, the good news is that I was released from hospital on Monday. I had the drain out on Monday morning, which was, let’s say, an interesting experience. The feeling of something popping out of your insides while you are fully conscious is not one I would care to repeat too often (let’s hope never again!). But it was my ticket out of the hospital, which was all that mattered, because by that stage I was really struggling to sleep at all, the food was making me feel sick and I was bored to tears. I came home on Monday afternoon. I was so happy to be home, in my own bed, surrounded by my favourite people and pets, and because I had felt reasonably okay in hospital, I assumed things would just continue to improve when I got home. I couldn’t have been more wrong. 

I woke on Tuesday morning feeling absolutely awful. The pain was so intense, I thought the drain site must have gotten infected because it was radiating all through my neck and teeth and throat. I couldn’t even drink Ensures, or even milk because it stuck in my throat and I felt like I couldn’t breathe. My voice also changed and became very nasal. Something was definitely not right. I called the Macmillan team, who asked me to send a photo of my neck. I was all ready to be readmitted for infection, but they just said it looked normal and that having that much pain was also normal, but to call my GP to review my meds. I got straight on the phone to the surgery, had some new meds prescribed and started a new routine of painkillers. I also tried to continue eating some of the foods I had managed in hospital, but realised very quickly that even those were no longer possible. I just ended up choking with any liquid streaming out of my nose. It was as though my throat was obstructed – and it probably was with the swollen tissue. I managed to eat next to nothing on Tuesday, which started to worry me as well as the team, and they told me to come back in on Thurs for the MDT meeting even if my pathology results weren’t back by then, just so they could review me. They also talked about possible readmission to have the NG tube put back in, the thought of which absolutely terrified me.

On Tuesday, I felt like the pain would never end. I had to re-do my med schedule to make sure there wasn’t a minute that wasn’t covered – pre-empting the pain if you like. To be fair, my consultant had warned me it would get worse before it got better and he really wasn’t wrong. Sunday, Monday and Tuesday were awful and the only way through it was to take it minute by minute, hour by hour and day by day. The downside of this approach is that time passes so painfully slowly. The big irony of this surgery is that taking meds is also a huge challenge in itself – you need the meds to ease the pain, but to take the meds you have to be able to swallow. I can have the soluble or liquid versions of the meds but I find these even more frustrating as it takes about 20 minutes to swallow a cup of liquid, whereas tablets are instant, and who has 20 minutes to spare to sip meds at 3am??

 When I woke up on Weds morning, the pain felt slightly less intense, and I was feeling quite determined, despite the pain. My new friend told me she had been told to try toast, so I decided to tackle toast again and succeeded (woo hoo!), which was a really big deal, as it took about 2 hours and I had to wash every single mouthful down with lukewarm, milky tea. I also managed a yoghurt and a Calippo. These are my new best friends! For dinner I decided to be super brave and try a cheese soufflé – I can’t even begin to tell you how amazing it was to eat that. I didn’t manage the harder outside parts but I was very pleased with the soft cheesy middle as a start.

Buoyed by my soufflé success, on Thursday I made some scrambled eggs with butter and double cream, had another soufflé  and more toast. I was NOT going back for that tube.

On Thursday afternoon it was back in the car for the follow-up MDT meeting. I wasn’t expecting to see my consultant because the purpose of the meeting had been for the dietician and speech therapist to check in with me following my pleas for help on Tuesday, but my consultant was there as well with some good news on the pathology results. The equivocal lymph node in my neck that everyone was unsure about - but were also convinced it was very likely to be cancer - WAS NOT CANCER! This was amazing news. He also managed to remove the tumour (26mm) and 3mm margins so he was pretty happy that it was all gone. The hard part now is that I have another impossible decision to make – I can choose to stop here and ‘watch and wait’ so to speak, with regular monitoring to see if the cancer returns, and if it does, we can then do chemoradiation. OR I can have a targeted dose of radiation only (no chemo needed) to make sure it has all completely gone. Rather like spraying Dettol on a surface after you’ve cleaned the dirt off, the idea is to kill any remaining microscopic cancer cells that may remain. This is a mammoth decision and not one I can make straight away so I’m going to do some research and think very carefully about this one as it’s a life changing decision whichever option I choose. But great news from the pathology either way. It’s a shame the tumour had grown to the size it was, because over 2cm makes it a stage 2 which is why the radiation might be a good option. Less than 2cm is stage 1 and generally wouldn’t need radiation if it’s not in the lymph nodes.

Other than that, I’ve been a bit slow on the Netflix front as I have pretty much spent the week on the sofa watching Wimbledon eating ice cream– a rare treat at a time when positives can be hard to come by.